Preprint Review Version 1 Preserved in Portico This version is not peer-reviewed

Perspectives of People At-Risk on Parkinson's Prevention Research

Jessi L. Keavney
* ORCID logo ,
Soania Mathur
,
Karlin Schroeder
,
Ray Merr
,
Sergio A. Castillo-Torres
,
Virginia Gao
,
Grace F. Crotty
,
Michael A. Schwarzschild
,
John M. Poma
Version 1 : Received: 19 December 2023 / Approved: 20 December 2023 / Online: 20 December 2023 (10:55:03 CET)

A peer-reviewed article of this Preprint also exists.

Keavney, J.L.; Mathur, S.; Schroeder, K.; Merrell, R.; Castillo-Torres, S.A.; Gao, V.; Crotty, G.F.; Schwarzschild, M.A.; Poma, J.M. Perspectives of People At-Risk on Parkinson’s Prevention Research. Journal of Parkinson’s Disease 2024, 1–16, doi:10.3233/jpd-230436. Keavney, J.L.; Mathur, S.; Schroeder, K.; Merrell, R.; Castillo-Torres, S.A.; Gao, V.; Crotty, G.F.; Schwarzschild, M.A.; Poma, J.M. Perspectives of People At-Risk on Parkinson’s Prevention Research. Journal of Parkinson’s Disease 2024, 1–16, doi:10.3233/jpd-230436.

Abstract

The movement toward prevention trials in people at-risk for Parkinson’s is rapidly becoming a reality. The authors of this article include a genetically at-risk advocate with the LRRK2 G2019S variant and two patients with rapid eye movement sleep behavior disorder (RBD), one of whom has now been diagnosed with Parkinson’s disease (PD). These authors participated as speakers, panelists, and moderators in the “Planning for Prevention of Parkinson’s: A Trial Design Forum” hosted by Massachusetts General Hospital in 2021 and 2022. Other authors include a young onset person with Parkinson’s (PwP) and retired family physician, an expert in patient engagement in Parkinson’s, and early career and veteran movement disorders clinician researchers. Several themes emerged from the at-risk participant voice concerning the importance of early intervention, the legitimacy of their input in decision-making, and the desire for transparent communication and feedback throughout the entire research study process. Challenges and opportunities in the current environment include lack of awareness among primary care physicians and general neurologists about PD risk, legal and psychological implications of risk disclosure, limited return of individual research study results, and undefined engagement and integration of individuals at-risk into the broader Parkinson’s community. Incorporating the perspectives of individuals at-risk as well as those living with PD at this early stage of prevention trial development is crucial to success.

Keywords

Parkinson's Disease; Prevention; Risk; Patient Advocacy; Patient Engagement; REM Sleep Behavior Disorder; Hyposmia; LRRK2; GBA

Subject

Medicine and Pharmacology, Neuroscience and Neurology

Copyright: This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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